Recovered

The antibiotics have been consumed, the extra fluids have been stopped, and the nebulizer treatments have slowed down. Zane is definitely feeling better. He still has some residual congestion, but that is to be expected. Yesterday he returned to school, and was very happy about it.

After all the confusion over appointments—and the will-they-or-will-they-not be scheduled—the coordinator managed to get everything lined up for Denver with the exception of dental. However, Zane’s pediatrician made the call that he should not be sedated a week after a bout with pneumonia. The coordinator was not happy with me; she had to cancel all the appointments she scrambled to secure. But come to find out, anesthesia told her they will not sedate until six weeks after pneumonia anyway. So now we are planning on a trip to Children’s for some time in May.


I am just happy Zane is on the road to recovery and acting like his old self again. It will take some time to get him back into his exercise schedule—since I backed off of it during his illness—but he will get there. He always does.


Thanks for sending positive thoughts and energy his way!

On the Mend

It appears Zane is on the mend. He has been on Azithromycin since Friday, and tonight he seemed to rally a bit, showing us hints of the happy and smiling Zane we usually know.

We’re still maintaining his intense regimen so he does not suffer any setbacks. Jeff took over care for the entire weekend while I worked, and he seemed pretty exhausted by the end of today.

We now have Zane’s appointments for Denver set, with the exception of dental. Unfortunately, if Zane is not 100% by the 29th, we will not go. He cannot undergo sedation unless his illness is completely wiped out. Fortunately Zane had walking pneumonia. This means his infection was mild and did not require hospitalization (a person can still walk around and do the things he or she typically does).

Thank you to all who thought good thoughts and said prayers for him. We really appreciate it!

Quick Update

Last night during appraiser training for DI—where both Jeff and I were involved—Zane started to run a fever. We gave him Motrin, but at 3:00am it had continued to rise. This morning—in the middle of tournament preparations—Jeff and I took him to the pediatrician. Long story short: he has walking pneumonia. Fortunately, his oxygen saturation levels were in the 90s, and he did not have to be hospitalized. For the next five days, he is on an antibiotic. The rest of his regimen remains the same.

I cared for Zane during the first half of the day, trying to get last-minute work done in between. Jeff took over care in the afternoon and into the evening while I set up the tournament site.

It has been a loooong day. I awoke at 3:00am and have been going full force until my arrival home at 9:30 pm. The tournament is all day tomorrow, so Jeff will take care of the boys. I am already having sweet dreams about Sunday. Hopefully Zane will be feeling better by then.

The Cold Bug Hits

Zane is sick. He managed to make it through most of the winter without catching anything. A simple call to the pediatrician to see if I could administer over-the-counter cough medicine resulted in an office visit and an intense regimen to get him well. This is because walking pneumonia is apparently going around. While Zane thankfully has nothing more than a cold, he needs to be 100% well for his sedation at the end of the month if we’re able to go.

Here are the new steps added to Zane’s schedule to get him well:

• Five nebulizer treatments per day (supposed to be six, but we can’t make that work). As Zane’s grandparents know, this can be a challenging feat. Each treatment ranges from 10-20 minutes, depending on the medicine. One of us has to sit with Zane and hold the mask on because—like most rascally four-year-olds—he doesn’t like to keep it on.

• Two 20-minute steam baths per day (supposed to be three, but we can’t make that work). Rule: no unsupervised trips to the shower/bath for kids in the house. So, I hang out with Zane in the bathroom—sometimes with a book.

• Three extra ounces of fluid in the form of Pedialyte (supposed to be 6-8, but we can’t make that work). Zane already spends three daytime hours being tube fed. We need to fit the extra fluid in between feeds. His small stomach can only handle a certain volume before he throws up. 6-8 ounces may be nothing to most of us, but it is a lot to Zane. I’ve found he can only tolerate an extra ounce between feedings. Thus, three ounces instead of 6-8. Otherwise, he’d be hooked up to the pump all day.

• Three doses of elderberry syrup. I can do this!

Normally, this would be par for the course. But this is DI (Destination ImagiNation) week for me. The tournament is Saturday. As the Regional Director—well, to say the least—it’s been busy and hectic. So this added regimen is a bit exhausting. Yesterday, I gave Zane a nebulizer treatment while on a business call; I conducted a second call in the bathroom with the shower running.

As for Justin, he’s pretty much been on his own until Jeff gets home from work. He made me pinky promise that he’d have his mom back by Sunday. I can do that, too!

I am not one to wish away time. But, needless to say, Sunday cannot come soon enough.

Appointment Updates

The coordinator who agreed to help set up Zane’s upcoming appointments is trying to make things right. Apparently, people failed Zane on all levels, which makes me sad. The pediatrician did not get records to Children’s in a timely manner; the complex scheduler completely dropped the ball; and the coordinator here in town was too trusting of other people to set the appointments, so she didn’t check up on them.

As it stands right now, Zane’s sedation, DMSA scan, and ABR are set up. However, we need confirmation for the anesthesiology consult for the day prior to the sedation. Plus, we are unsure whether we will be able to see the urologist for a follow-up appointment or the plastic surgeon for a consult since both are not in the office when we’re scheduled to be in Denver. Word is they will arrange to come in and see Zane. But I am a bit leery of those verbal promises right now.

So, we are still in limbo. The coordinator went out of town on vacation last week without resolving everything. Normally, this would make me nervous. But, sadly, I have convinced myself that things are not going to work out anyway. If they do, then okay. If they don’t, no disappointments.

Speechless

I am speechless today. Back in December, we enlisted the help of an outside person to schedule Zane’s appointments for Children’s Hospital since it is a laborious and fruitless task to attempt it myself. I tried once before and failed--not due to any incompetency on my part, but because offices and clinics seem less willing to work with parents than with fellow professionals.

As many of you may recall, Zane went to Children’s in November and needed to return for follow up. He was supposed to have the following appointments:

• Anesthesia consultation
• ENT appointment
• DMSA scan of his kidneys (under sedation)
• ABR (under sedation)
• Dental cleaning (under sedation)
• Surgery consultation for his ptosis

Jeff and I have been waiting to hear of the appointment times. We had indicated the end of March (after the Destination ImagiNation tournament ends) or the beginning of April as a range of time that would work for us. We hadn’t heard anything, so I contacted the outside party. She had gone to the Complex Scheduler at The Children’s Hospital for assistance despite the fact that complex scheduling specifically lists on its webpage that they do not schedule most of the above-listed appointments.

Bottom line: no one scheduled anything. Zane has no appointments. Zippo. Zero. None. Someone did not do her job. And who is the victim? Zane.

The sad part is that when we were last in Denver, the urologist said Zane’s scan needed to take place no later than then end of March or beginning of April. And now, here we are.

This leads me to one conclusion: If you want it done, you have to do it yourself.

At this point, I don’t know what is going to happen with Zane, his kidney health, and his appointments. Denver is at least seven hours away. It’s not a simple drive down the road. This mistake has started a whole chain of events that I simply do not know how to handle.

Now that I finished my rant, I am once again back to being speechless.